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#104549 10-02-2009 06:00 AM
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Greetings to the Group:

I am a 38 year old male with pain 1-2 months duration, that seems to becoming from the right tonsil or behind it. The pain radiates behind ear to and the jaw and bone behind the ear are tender. I have a history of post nasal drip and acid reflux.
I have recently had normal scope, normal ENT exam, normal MRI of the neck.

I do not have enlarged lymph nodes (all 7MM or smaller)

i do not have enlarged or asymmetrical tonsils

I have never smoked

My doctor is not concerned and after a bout of anxiety over this, I have calmed a bit too.

My question specifically is, if cancer were a source of this pain, wouldn't it need to be big enough to be visible either above the surface or through MRI. Pain is typically associated with advanced cancer, am I correct?

Thanks in advance.

JJ

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IMO oral cancer breaks a lot of "rules" when it comes to cancer.

For instance, I had ZERO pain and was staged a IV when it was discovered. I was like...what happened to stages I II and III? Many here do have pain as a first symptom. Some, especially in the front part of the oral cavity, actually see or feel their first encounter with cancer but many do not. My first symptom was I discovered my neck slightly larger on my left side and still I did nothing for a month thinking no pain, nothing to worry about.

You can always get another opinion.

Other than doing the same things, the only other thing would be a PET.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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I went for a year with nothing but ear pain that my GP wrote off as allergies. Then oops enlarged tonsil, stage IV.


Flip
_________________________________
Age: 54 SCC Tonsil + 3 nodes
Radiation and Carboplatin
Treatment 4/1 - 6/7/2009
No surgery, no PEG
Never smoked
Drink socially (brew my own beer and love wine. A bottle of scotch lasts me a couple of years)
CT 11/4/09 No sign of envolvement in Tonsil or nodes
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I had un-godly pain on my tongue for about a year and a half before I was finally diagnosed. I mean unbearable. It looked terrible...like I ate my tongue every night for dinner. It was bad....I was stage 1 so they tell me.

Last edited by suzanne98; 10-02-2009 06:11 PM.

Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
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Pete had Zero pain and was diagnosed Stage IV...only symptom an enlarged node under the jaw that appeared overnight..so.. no pain does not mean no cancer.

Cancer is sneaky!!


Caregiver to husband Pete, Dx 4/03 SCC Base of Tongue Stage IV. Chemo /Rad no surgery. Treatment finished 8/03. Doing great!
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It is sneaky!!! Well put...


Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
Joined: Jun 2009
Posts: 875
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Posts: 875
Hello jj:

The one thing I learned in getting diagnosed correctly is that "you" have to be really assertive. I accidently found a very small swollen place on the right side under my chin while we were checking out blood pressure machines at work that were placed in the break areas. A co-worker said you can check your pulse also by just putting your fingers under your chin, which I did and then found the area sligtly swollen compared to the other side. It felt soft and I had absolutely no pain. I went to my general practitioner who said it was from my sinuses and was a swollen gland that would go away. After several weeks, I still felt it (it hadn't gotten any bigger), so called my doctor; the nurse told me that I was being paranoid and to stop worrying - it'll go away. Several weeks later, it hadn't, so I decided to go to an ENT on my own. He had a needle biopsy performed on the area - it came back NEGATIVE. During this entire time, I did have a mild sinus infection, and in looking down my throat with a flashlight frown I could see my tonsils on the right side were just a tad larger than the left side, but they didn't hurt, nor did my throat. Nevertheless, I waited another month or so, and then went to a different ENT. He said my tonsils probably did need to come out because they looked somewhat swollen and probably infected, or I could just wait and see if they got better with antibiotics. I opted to have them removed. Well, underneath was Stage IV squamous cell cancer, which was in one lymph node on the right side, and another on the left. This was November 2007. I had 7 weeks of radiation with one day a week chemo. I had been a pretty heavy smoker for years previous, but quit the day of my surgery. All of my follow-up CAT and PET scans since then have been clear, thank the LORD, and I hope that continues. So, not to scare you, but you will probably feel much, much better if you went for a second opinion or even a PET scan, if they would do it.
julieann


Julieann
Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer smile
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I had some pain for months and my teeth started to break off and fall out. They just ignored it until the surgeon that does my scopes saw it on his way down my esophagus after I asked him to check me out. That was my beginning. At least 4 or 5 ingnored it when I told them with the standard,. it will clear up. LOL


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
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I was told the spot growing on my tongue was probably a STD because I was only 20 years old and I couldn't possibly have cancer. That changed when the biopsy results came back positive for SCC. Don't ignore your gut if you think something isn't right.


SCC dx at age 21 4/03, partial glossectomy and partial neck dissection 4/03, IMRT 6/03, cancer free 9/03 HBOT 7/04-10/04, cysts on thyroid 6/06, biopsy and throat endoscopy 4/09, dead bone removed from jawbone 9/09, fibula free flap and partial mandible removed 12/09 6 yr survivor

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